Responsibility offered to help newly diagnosed

New members join LWL everyday, while some members chose to leave. Its always going to be that way but to regret who is not here and not support those who are here is not why LWL exists , more experienced members should be sensitive to the needs of the newly diagnosed, please try.

Thanks

I am a member of a 12 - step group, and we pray for the still suffering before we pray the Serentity Prayer. Perhaps praying for those who are not here would be of benefit. People come and go, and come back again and many times leave again. It is their choice. I spoke with a man yesterday who is ready to die. He doesn't want to die, but he's ready. He suffered a serious condition with his heart - many people don't live through but he did. He hasn't felt 100% back to normal yet. I just listened to him and offered support, is all I can do. Is all any of us can do, offer support to those who are here.

Trisha

I read everyones posts and do get a great benefit from them. I dont really post much but knowing that I am not imagning all this is very comforting. Thank you all for being here!

I can not belive that we cant greave over the ones who left/died. Thats just very messed up and I have no desire to stay here. remove my post or not. what do I care. I am sorry that I miss the 2 girls that have died not to long ago and I am sorry that I miss members that have left this group. but I what I am even more sorry about is that I even exspressed that concern.

I would really like to be an encouragement to new ones coming in; however, at times I feel overwhelmed. I have wondered at times if we try and keep contact with everyone...or...if we choose a few to get to know...and try and be consistent with those.

It seems lately we have a lot joining and everyone should feel a warm welcome. I so appreciated the warm welcome I received.. and the faithful ones who have kept in touch.

Now is there a criteria for those we "friend?" I don't claim to have knowlege for everything listed; however, I know the pain, undercertainty, and fear, I've experienced in my diagnosis. And I hope to convey that to the ones I "friend." As far as I am concerned we are all friends on this LWL site! How aggressive should we be? Welcome them and wait for their questions, or jump in and be involved all the way?

Thanks for all you do.

Faye

Thanks!

There shouldn’t be so much pressure about friendship and posting on the site, because in the end, everyone will feel uncomfortable. I joined because my mother thought It would good for me to speak to others who are going through what I am going through. It shouldn’t feel forced, instead it should be voluntary to participate. I personally wouldn’t mind connecting with everyone, because anyone going through this illness, or any illness could use a friendly support system. This is supposed to be a open, welcoming place, for people to vent and offer support if they can. I have only been on a few weeks, and I’m trying to get to know all the people I can, because in real life, I feel so alone with this disease. So I chat and post because it keeps me from crying and wondering why me all of the time. I know there are other people like me out there or maybe feeling worse and they may find their way here. Is it my duty to reach out to them all, no I don’t think it is. But the type of person I am I couldn’t turn a deaf ear on someone who might need someone and has no one. But to each his own. I try to respect the site, I participate as I can, and I’m grateful for those who reached out to me when I needed it. I even understand those who didn’t, it’s ok. People should feel free to participate as they can, it’s their choice., as long as we respect each other.

Faye, Terri, JC, Risa, SweetNovember -

Although I am undiagnosed, scared and suffering, you have made my life and my days better.

There are no ways to express love for that.

Relationships are what you make of them. If you choose to put your personal life out for other people to know of, then it’s a better way to bond and relate. The biggest problem I’ve found on social-media support groups is the tone people choose to use. One thing is meant, but was interpreted a different way. It just goes back to, if someone asks advice, give it. But always talk to people, and not at them

I am with you JC!

I'm with you on the same mission, to help, and that is what I meant, I'm with you about the support, I know how great it was to be welcomed so wonderfully when I joined the group. I instantly felt like I belonged and was understood! I try to 'friend' every single new member on 3 sites, because I feel it helps to make everyone feel welcomed, understood, feel at home to join the discussions. I want to give back what I was so graciously given!

As for you, you welcome every single person, wish every single person happy Birthday and moderate everything! You are an amazingly busy, dedicated man, doing good work!

This is my opinion regarding Lupus patients and LWL.

When i joined i was over whelmed by the response and full support i got from member's and mods and to me it made me feel comfortable to chat and open up and when you find that goal...there's nothing better.

LWL is fully established on full support & love and in my eyes... all member's should be treated the same wheather they're still waiting diagnosis or not and when member's have passed away, all our full respects have been given to the friends and family's....no one can do anymore but just remember them mentally like we would someone dear to us and like JC as pointed out the link for grieving the loss of those gone.

I've connected with member's who are still waiting diagnosis and the site also prepares them with knowledge they need incase they have lupus or keep waiting till something shows up besides wanting support, we all need love and support it's a main factor in our lives, i'm also intouch with members who have the same health issues but because they don't think they're so severe than other's they don't comment much because they feel embarressed and i've pushed them more because whatever the extent of symptoms....each and everyone of us, wheather it being new members or member's like myself had it for years....we still need support of those suffering in the same way.

"LWL is a family held together through the issues of lupus....we should'nt look at it in any other way"

The warm welcome I received when I joined was much needed and very appreciated. I have only been here (LWL) less than a month and diagnosed since the end of June. So I am really a "newbie". Right now I spend much more time reading discussions and searching topics I have questions about than posting. I have set a goal for myself to welcome at least 1 new person a week as I feel it's important to pass on the good things I receive. This is enough for me because I have always struggled to be a good pen pal. I try to keep in touch with the new friends I've made because I feel connected. For me, more is too much. I get overwhelmed easily as I am a scatter-brain. My Fibro-fog has now merged with Lupus-fog.

I agree that a warm welcome, support and understanding should be offered here. But also I think if a member is sad at the loss of someone who was special to them and in their support system they should be allowed to express it. LWL is a support system. Maybe the only support system or primary one members have. This being said, a protracted,continued yearning for the way things "used to be" is not useful to anyone. Life is not static. Things change. What makes us special is the ability to recognize these changes and adapt. Ideally we will learn and grow. Take the good with us and drop the rest aside as we move ahead. Isn't that really what we all are doing? Traveling along the path of life as best we can.

Although each of us are at different points, we will share common experiences. Pain, wellness, joy, frustration, sadness, and yes grief are some we will share. What we contribute and take away - in short - how we live along this common path is what is important.

Life is a journey not a destination.

Thank you to my new friends. May today be filled with serenity.

JC,

Nicely said....and the same with what i said, once our repects have been given life carries on and we get new member's terrified of Lupus 60% of the time and hearing about losses won't help new member's one bit.

That's why it's so important to welcome new members in a warm way.
John "JC" Colyer said:

I appreciate the need to express sorrow for loss, we also have new members joining everyday some newly diagnosed. To read to many post about loss could scare them from joining, that's why the group serves that purpose, I am a work in progress as is LWL, I have to try to make us as welcoming as possible with all members help.

Yes I see your point. No one has come here to listen to endless posts of grief and sadness. To be honest though, I haven't seen too many of those kinds of posts as a "newbie". Thank you for pointing out the grief group. As I am new I didn't know about it. Your post may also serve as a gentle reminder to long-standing members who may have forgotten about it. When I checked out the Groups section I must have passed right over that one. Selective sight I imagine. It's a good group to have. Special Groups do fill a need for the special interests of the larger membership.

Maybe this discussion will lead more to join the grief group for extra support when needed.

I am still finding my way around. Every time I log on I find something new!

Thanks

Hello Lisa,

There is such alot to the site and that's why i think it's great all round....Lupus can cause bad issues but we think it's not a good issue to constantley be on about, especially with member's joining because you know as much as me that Lupus can cause some terrible pain at times.

Love Terri xxx

sunnyworm said:

Yes I see your point. No one has come here to listen to endless posts of grief and sadness. To be honest though, I haven't seen too many of those kinds of posts as a "newbie". Thank you for pointing out the grief group. As I am new I didn't know about it. Your post may also serve as a gentle reminder to long-standing members who may have forgotten about it. When I checked out the Groups section I must have passed right over that one. Selective sight I imagine. It's a good group to have. Special Groups do fill a need for the special interests of the larger membership.

Maybe this discussion will lead more to join the grief group for extra support when needed.

I am still finding my way around. Every time I log on I find something new!

Thanks

JC,

I had a gastric by-pass 11 years ago. I was online in an obesity help support group, and about a week before my surgery - another member had severe complications and ended up in intensive care and I freaked out a little bit. But I had alot of faith in my surgeon, and just because it happens to one it doesn't happen to all. My pain post op, was minimal and I've kept the weight off give or take a few pounds I'm struggling to re-lose from the predisone, and the swelling that I have. My Rheumy gave me a pamphlet to take home after my diagnosis, and after reading it I just cried. I started reading, and found a book for the newly diagnosed, and then found LWF soon after. I'm grateful to all who post and share and are willing to help us newbie lupies through this.

Trisha



Tez_20 said:

JC,

Nicely said....and the same with what i said, once our repects have been given life carries on and we get new member's terrified of Lupus 60% of the time and hearing about losses won't help new member's one bit.

That's why it's so important to welcome new members in a warm way.
John "JC" Colyer said:

I appreciate the need to express sorrow for loss, we also have new members joining everyday some newly diagnosed. To read to many post about loss could scare them from joining, that's why the group serves that purpose, I am a work in progress as is LWL, I have to try to make us as welcoming as possible with all members help.

I have been struggling for over 20 years with this sneaky disease with little or no understanding from my family and friends. Finding this site and just having people that understand what I am going through is priceless. Unless you have a chronic illness or lupus your self it is very hard to understand. If I had a dollar for every time Ive heard "But you dont look sick" I would be rich. People just dont get it ...but you guys do thank you

Julie,

I am sorry to hear your family and friends don't understand and alot of the time a blind eye is turned ti illness which is totally wrong as anyone never knows what can happen to them in life.

Oh i've had that saying so many times julie about you don't look sick but through pure ignorance alot of people don't take the time to recognise alot of diseases.

Julie your welcome from us all and it's lovely to have a member with us who we can share our love and respect with concerning Lupus and help one another in so many way.

((Hugs & kisses)) Terri xxx

JC -

I agree, people will always come and go. While it is very sad when people choose to leave or when one of us passes away and we are left grieving, our main goal here is to support others with Lupus. Those of us who have had this disease long term will obviously have the experience to help the newer members in some instances - whether they have a dx or not. We can also help those who have long term diagnosis. However, some of these newly diagnosed members have stepped in and been extremely supportive, kind and caring to me and others - they know more than they are sometimes given credit for. With my years of having Lupus and chronic flares along with other auto-immune diseases and Fibro, even a brief "remission" - I have much experience to use in advising and supporting others - but my experience at LWL has mostly been positive with the support I receive even from the new members! I've seen that they come in here for support, but they realize that it is very helpful for them and their disease to give support back!! Sometimes it doesn't come down to how many years one has been diagnosed, but it comes down to their experiences, flares and symptoms of the disease over time. The newly diagnosed could be experiencing the disease in a terrible way that I never have - therefore, they may have supportive information that I did not know. Then, there may be someone who has had it as long as I have or longer, but who hasn't really flared like I have - they may not have as much support to offer as they cannot identify with the actual active disease.

Either way, our role here is to be sensitive enough to support one and all! Welcome the newcomers and let them know that they have a place to turn!

Thanks JC for reminding us all of this!

Hugs - Draginfli/Ang